Atypical


Atypical parkinsonisms are conditions in which an individual experiences some of the signs and symptoms of Parkinson’s disease (PD) — tremor, slowness, rigidity (stiffness), and/or walking and balance problems — but does not have PD. Atypical parkinsonism can be due to certain medications (some anti-nausea and antipsychotic drugs), other brain disorders (repeated head injury or multiple small strokes) or neurodegenerative diseases.

Parkinson’s Plus

The neurodegenerative diseases, which cause damage or death of brain cells, include corticobasal degeneration, Lewy body dementia, multiple system atrophy and progressive supranuclear palsy. These conditions are often referred to as “Parkinson’s plus” because they mimic PD but have extra associated symptoms (the “plus”). They can be misdiagnosed as Parkinson’s disease because no blood or imaging test can, on its own, make a definitive diagnosis. (As with PD, the diagnosis is based on a person’s medical history and physical examination.) Early in the course, people with Parkinson’s plus syndromes also may get some benefit from levodopa, the drug most commonly used to treat PD. A poor response to levodopa, development of additional symptoms and more rapid progression of disease may eventually differentiate Parkinson’s plus from PD, although it can take years for these differences to emerge. As with PD, no disease-modifying therapy has been discovered for any of the neurodegenerative atypical parkinsonisms so treatment is symptomatic and supportive.Corticobasal Degeneration (CBD)Lewy Body Dementia (LBD)Multiple System Atrophy (MSA)Progressive Supranuclear Palsy (PSP)

Management of Parkinson’s Plus

These diseases are complex conditions that progress over time. As ongoing symptoms worsen and new symptoms arise, a person’s needs will change and caregivers’ roles and responsibilities will evolve. A team approach involving the person with disease, caregivers, family members and multiple medical professionals, is necessary to address the multitude of symptoms. As with PD, no disease-modifying therapy has been discovered for the neurodegenerative atypical parkinsonisms. Treatment relies on medications to lessen symptoms, allied health care services, assistive devices (canes or walkers) when necessary and caregiver support. Palliative care specialists can be especially helpful consultants for managing symptoms and coordinating goals of care.

Levodopa is usually the initial therapy for motor symptoms, although most people do not get a significant or long-term response. Other Parkinson’s medications are sometimes used in conjunction with or instead of levodopa, but in general these are not very effective either. For dystonia, Botox injections can be helpful, and for associated non-motor symptoms (such as memory, behavioral or sleep disturbances), doctors may prescribe a variety of other medications.

Physical and occupational therapy are beneficial, specifically for dystonia, gait and balance problems, and falls. In earlier stages of disease, therapists can develop programs aimed at maintaining mobility, preventing falls or falling in ways to minimize injury. They can also assess the need for a cane or walker. In advancing disease, therapists can teach exercises to maintain joint range of motion, evaluate the home for safety and suggest modifications or adaptive equipment (such as shower grab bars or a raised toilet seat), and determine the appropriate type of wheelchair if one is necessary.

Speech therapists can recommend language exercises for speech disturbances and dietary and/or mealtime adjustments for swallowing problems. If swallowing problems are particularly severe (leading to weight loss, choking or pneumonia), your therapist or doctor may discuss starting a feeding tube. While not always required, it’s worth thinking about this possibility early on so that a person (and their caregiver’s) thoughts can be taken into full consideration.

Throughout the course, social workers can provide educational resources, link to support groups and assist with finding in-home care services or alternative living situations. Palliative care providers can be consulted at any point for help with managing symptoms and determining goals of current and future care. In conjunction with a person’s movement disorder specialist, palliative care experts can aid in optimizing medical therapy while lending extra emotional and spiritual support, and c

https://www.michaeljfox.org/understanding-parkinsons/living-with-pd/topic.php?atypical-parkinsonism

Butyric Acid

Alternative Medicine Review has the article “The Potential of Butyric Acid as an Alternative Treatment for Parkinson’s” atlasbiomed.com “Could Parkinson’s Disease Begin in the Gut” states “butyrate producing bacteria less in PD.”

The man from the Parkinson’s News Today forum, Russ, said he uses T. E. Neesby brand Butyrex. The ingredients are: calcium 480mg, magnesium 240 mg, Butyric Acid 3.6 g. Having never heard of this brand I was apprehensive. But I have been so pleasantly surprised. Butyric Acid is a short chain fatty acid that helps the colon. I was concerned that it would not make it to my colon but perhaps it is because the improvement is very definite.

Oh and I want to add that On the same Parkinson’s News Daily forum, a wife shared that her husband has had significant improvements with mannitol. I started using it a few weeks ago figuring, what the heck, might as well try. I am suddenly smelling things I previously did not even know had a fragrance like my mascara!

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Butyric acid naturally occurs in butter, hard cheeses (e.g., parmesan), milk (especially goat’s and sheep’s), yoghurts, cream, and in some other fermented foods (e.g. sauerkraut, pickled cucumbers, and fermented soy products) but in very small and insignificant amounts for gut health.

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I’ve read the theories that Parkinson’s begins in the gut. And among the foods that numerous sources say that the best diet for gut health includes a lot of fermented food I’ve also read that butyric acid is necessary in the colon to enable the probiotics we take be effective. But it is hard for me to eat enough fermentation to be effective. Therefore I was excited to learn about a supplement to enable me to increase my butyric acid consumption.

Just saying.. for what it is worth.

GERD

ok.. I’m going to attempt to get my blog entry’s linked in the index again. So as I find information such as this item, I’ll be posting them.

GERD or GastroEsophageal Reflux Disease is what happens when the Sphincter at the base of the esophagus that connects the mouth to the stomach, no longer closes tightly and allows stomach acid and food to backflow into the esophagus creating a host of uncomfortable symptoms. The esophagus becomes inflamed and irritated because it is not meant to be exposed to stomach acid.

Who Can Get GERD?

A common issue in people with Parkinson’s disease(PwP) and the general population is GERD. In PwP it is 4.1 times more likely to occur than in non-PwP.

When I had my EGD the Dr. told me that acid reflux had damaged my esophagus. It seems funny that when my lips can’t hold tight enough to keep the drool from making sores at the corners of my mouth, and the opening to the stomach doesn’t close tightly, yet, spasms close off the esophagus in between.

I typed about it all in my Knock on Wood post.

Dust off the sewing machine

Eliza-Jane posted: Trouble turning in bed?

I made myself a couple of satin tubes. When one is in the wash I have a back-up. I bought the satin online. Here are the instructions. Cut a length of satin the same width as your fabric i.e. approx. 1 meter. Then cut a second square the same. Place the first square down, satin side up with the cut ends at the top and bottom. Then place the second piece on top of the first, satin side down with the cut ends left and right. Do not just fold it over on itself, that will not work. Stitch the 2 sides together leaving the top and bottom open. Then hem or make a satin binding for the top and bottom. I used a French seam on the sides. The top and bottom are left open like a tube. Place it on the bottom sheet of your bed and when you get into bed sit on the bottom end of the slip near you. You will find this helps to slide over and up and down. It’s not perfect but it helps.

Humpty Dumpty moments

Neither PwP nor a doctor can predict which symptoms will arise or the severity of those symptoms. It is a lifelong and progressive disease, with symptoms steadily worsening over time, therefore fall prevention for many is the first call to action for preparing their loved one for the journey ahead

Teri wrote : An approach to avoid injury while falling:. Knees, ankle, and all the rest, most important to protect is the HEAD.


So many falls went straight to my head. They didn’t hurt A lot, but I sure got worried as they piled up. So I decided that before my almost inevitable HUMPTY DUMPTY moment, when all the king’s horses and all the king’s men couldn’t fix a thing, I would find a helmet. And this is what I found (sorry, the photo disappeared) I paid $176.00 for it out of pocket; Medicare wouldn’t cover it I have fallen and hit my head many times since, AND IT WORKS

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A pastor recently typed: Don’t let pride or stubbornness get you injured or dead
use a walking aid to prevent falls. My motto, “I’ll crawl before I’ll fall.” and I have done so. Bible says ‘pride goeth before a fall.’ May God bless us on this journey!!!

——————— But to consider the feelings of the PwP, to allow them to not feel conspicuous, and normal, I found two Ribcap products. (see the links)

An owner and wearer of two Ribcap products, the baseball style hat and also the beanie. I love how ‘Protection meets fashion’ in these beautifully crafted pieces of headwear and at-risk persons like myself can wear head protection without the worry of any stigma.

Falls and Common Household Hazards

If you or a loved one has Parkinson’s disease, here are tips for preventing falls around the home:

  • Floors. Remove all loose wires, cords, and throw rugs. Minimize clutter. Make sure rugs are anchored and smooth. Keep furniture in its accustomed place.
  • Bathroom. Install grab bars and nonskid tape in the tub or shower. Use nonskid bath mats on the floor or install wall-to-wall carpeting.
  • Lighting. Make sure halls, stairways, and entrances are well lit. Install a night light in your bathroom or hallway. Make sure there is a light switch at the top and bottom of the staircase. Turn lights on if you get up in the middle of the night. Make sure lamps or light switches are within reach of the bed if you have to get up during the night.
  • Kitchen. Install nonskid rubber mats near the sink and stove. Clean up spills immediately.
  • Stairs. Make sure treads, rails, and rugs are secure. Install a rail on both sides of the stairs. If stairs are a threat, it may be helpful to arrange most of your activities on the lower level to reduce the number of times stairs must be climbed.
  • Entrances and doorways. Install metal handles on the walls adjacent to doorknobs of all doors to make it more secure as you travel through the doorway.

Tips for Maintaining Balance With Parkinson’s Disease

  • Keep at least one hand free at all times; try using a backpack or fanny pack to hold things rather than carrying them in your hands. Never carry objects in both hands when walking as this interferes with balance.
  • Attempt to swing both arms from front to back while walking. This may require a conscious effort if Parkinson’s disease has diminished your movement; however, it will help you to maintain balance, posture, and reduce fatigue.
  • Consciously lift your feet off of the ground when walking. Shuffling and dragging your feet may cause you to lose your balance.
  • When trying to navigate turns, use a “U” technique of facing forward and making a wide turn, rather than pivoting sharply.
  • Try to stand with your feet shoulder width apart. When your feet are close together for any length of time, you increase your risk of losing your balance and falling.
  • Do one thing at a time! Don’t try to walk and accomplish another task, such as reading or looking around. The decrease in your automatic reflexes complicates motor function, so the less distraction, the better!
  • Do not wear rubber or gripping soled shoes, they may “catch” on the floor and cause tripping.
  • Move slowly when changing positions. Use deliberate, concentrated movements and if needed, use a grab bar or walking aid. Count 15 seconds between each movement. For example, when rising from a seated position, wait 15 seconds after standing to begin walking.
  • If you become “frozen,” visualize stepping over an imaginary object, or have someone place their foot in front of yours to step over. Try not to have a caregiver or companion “pull” you, this may throw you off balance and even prolong the episode.
  • If balance is a continuous problem, you may want to consider a walking aid such as a cane, walking stick, or walker. Once you’ve mastered walking with help, you may be ready to try it on your own again!

I’d like a Harmonica, please

Can you imagine sitting for a half hour each day breathing in and out thru a straw? That is an exercise used by pulmonary rehabilitation to strengthen diaphragm muscles for COPD COPD is a catch-all term that includes people diagnosed with illnesses like emphysema, asthma and chronic bronchitis. (I think with our slowed muscle response time and weakened muscles PwP could benefit equally well.)

VA Health Promotion-Disease Prevention Coordinator in Tampa… Dave Folds, says “The type of breathing used to play the harmonica is like the breathing exercise used in therapy for COPD. Basically, the breathing exercises are pursed lips style breathing, like breathing in and out of a straw (which would be) the same way you would blow in and out of a harmonica”

“By making music, it’s much more enjoyable than sitting at home for half an hour each day breathing in and out of a straw,” Folds said, “Most people in the class won’t do that, and they say so. But they will sit at home and practice their harmonica, some of them for hours.”

A veteran who has been learning to play the Harmonica said. “I do feel different. It made a noticeable difference. I have more endurance.” Additionally, “With the harmonica, you’re actually achieving something and hopefully getting pleasant sounds out of it. You’re getting the reward for the effort you put in.”

And thinking about breathing issues… I’ve begun trying to do the tongue in teeth, swallowing exercise as shared by a fellow PwP, since reading at the included link…

Early occurrence of inspiratory muscle weakness in …

“In Parkinson‘s disease (PD), respiratory insufficiency (including functional and muscle disorders) can impact dysarthria [difficult or unclear articulation of speech] and swallowing.”

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He typed, “I used to have it. Now I do 5 minutes of “exercise” every night and it’s gone. The exercises include “Swallow 20 times while holding your tongue in place with your teeth. I recommend that you go through “the system” and spend some time with one of these swallow therapists.”

B complex and Anxiety

I wanted to tell a person struggling with anxiety about my blog, but when I looked I found this was still in my drafts. It contains three pieces of conversation that was had on a chat format for PWP.

“Weird but wonderful,

I’ve been having unfounded anxiety lately where I constantly feel like fight or flight jitters. Long story short, I read on some random website that B complex can help with this. Lo and behold, it did! (Or) I’m enjoying the placebo effect again. I also took a D vitamin today.

I actually have been avoiding B complex because I would think this would interfere with carbidopa, but I seem to be having a really good day of low anxiety and very mild PD symptoms.”

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“Elevation of plasma homocysteine (hyperhomocysteinemi) has been linked to cardiovascular disorders, an increased risk of fractures in the elderly, stroke, and to neurological conditions such as PD and Alzheimer’s. Even mild elevations in homocysteine can significantly increase the risk of cardiovascular events such as stroke and heart attack and increase the risk of cognitive decline in the future.”

neurologysolutions.com/park…

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“Many studies have shown that PWP are often deficient in b12, and lacking the vitamin can cause all kinds of neurological, psychiatric, and motor symptoms. B12 is also a methyl donor, so it can certainly cause anxiety and panic attacks in some that are over methylated at high doses, but more commonly it’ll have an opposite effect in those who are undermethylated. Get tested and supplement adequately.”

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“Have you tried the Hardy’s den yet? Worth a shot. It has lots of trace minerals too. Maybe you have a few things missing in your diet so this tops them up as well as all the b vitamins.”

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Since anxiety isn’t a problem for me, I haven’t pursued checking out Hardy’s Daily Essential Nutrients. But I left it in, for what it is worth. Sue

A Sugar that is good for us

Please be sure to check out the update 8/21/21 at the end of this post.

Glyconutrients are a group of sugars extracted from plants and thought to be essential for the body by helping cell-to-cell communication.

I first heard about glyconutrients as I listened to an interview about restoring our bodies to normal with Dr. Reg McDaniels as I was trying to learn about his product called New Eden. Their glyconutrients are taken from Aloe.

I posted on a forum for PwP that I was going to try it, and received (an opinion) that “It is just a sugar substitute… nothing to it.” So I typed glyconutrients into a search where I saw Mannitol credited with having glyconutrients. I remembered seeing posts where various PwP had attempted to steer us to Mannitol. ………………………………………………………………..

That is when I found research findings made in Israel (you will need to read the script, unless you are fluent in their language) on the web site for Mannitol. “Homeotreat developed a unique MANNITOL powder, containing, not only the natural sweetener (Made from vegetables such as onions, pumpkin, seaweed, mushrooms and more), which causes a decrease in the production of the alpha-synuclein protein but also the MUCUNA plant, which supports the increase in the amount of essential ingredients to healthy brain function.” ………………………………………………………………….

Mannitol is a type of carbohydrate called a sugar alcohol, or polyol, which are water-soluble compounds that occur naturally in many fruits and vegetables.

There are basically eight glyconutritients that scientists know about. These include: – Fucose – Galactose – Glucose – Mannose – N-AcetylGalactosamine
– N-AcetylGlucosamine – N-AcetylNeuraminic acid AND– Xylose

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Then I discovered another web site with this statement : “– mannose and galactose — are the most important of all the different Glyconutrients. In fact, these two Glyconutrients act as the commander in chief for all immune system and cell to cell communication processes. Based on real scientific evidence, there is absolutely no validity whatsoever when it comes to the so called eight essential sugar theory that many companies tout in selling their Glyconutrient products. The bottom line is that the more you increase the level of other plant sugars in a Glyconutrient product other than Aloe Vera galactomannans, the more real health properties are diminished.“

“It turned out that MPS had been isolated from Aloe, and extracted and dried as a powder extract utilizing a proprietary method. More specifically, MPS is a specific molecule called the galactomannan that is a combination of galactose and mannose in long linear chains.” –this one was pricy.. $190./30 day supply

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I saw that Mannitol powder is sold (some claiming to be 100% pure) from lots of sources. locally at Walmart. drug stores or health food stores as well as online from many sources. It is sold as a low glycemic sweetener. The price is extremely cheep compared to the three I listed above. And from posts of users I have concluded, not as effective… depending on source and purity, etc…

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……………………………..Approved as an injectable Medication

As a medication, it is used to reduce intraocular pressure in the eyes, as in glaucoma. The mannitol is a new solute in the intravascular space, which increases the tonicity of the blood plasma. The increased tonicity of the blood plasma draws water out of the vitreous humor of the eye and into the intravascular space.

Diuretic: It can be used in a lung test to diagnose asthma and other breathing problems.

……………………………………………….As a supplement:

Mannitol powder it may have some health benefits when taken as a supplement.† Mannitol may support the digestive system, kidneys, and bladder.†

Mannitol is a type of sugar alcohol used as a sweetener. It is used in diabetic food as it is poorly absorbed by the intestines. In addition to being found in whole foods, mannitol is commercially produced to help reduce calories from sugars in packaged foods. Its most common application is in chewing gums, both as a sweetener and as a powder to keep pieces of gum from sticking to its wrapping and machinery.

Mannitol has a variety of uses and it is also used to reduce elevated pressure in the brain (Central oedema) and in the eyes. Mannitol is a common low-calorie sweetener approved by the FDA and EFSA. ……………………………………………………………..

Sugar alcohols, including mannitol, have been shown to benefit oral health in several ways. They don’t contribute to cavity formation. When used as a sweetener in gum, the act of chewing also protects teeth from cavity-causing bacteria by promoting the flow of saliva. The FDA recognizes mannitol and other sugar alcohols as beneficial to oral health ……………………………………………………………..

When John and I began the New Eden, we were just doing the recommended dose. But since that time, I have learned that is considered a maintenance dose. For acute out of balance bodies, Dr. McDaniel recommends doubling the daily intake. I’m sure with two of us using from the same cannister, we will run out before the next cannister is set to arrive. [if on autoship, the cost including shipping is $109. /330 grams]

Since I had opted to purchase of the product from Israel, which includes the Mucuna. [but the glyconutrients aren’t derived from Aloe] I will alternately use the Mannitol in place of the New Eden… and attempt to notice any variations in body responses. for price comparison… 900 g / 109.90 +shipping from Israel $25.85 = $136.75

John said, ” the way I presented it seemed a bit negative.’… Not my intention. If you listen to the linked videos, you may feel more positivity.

8/21/21 By way of update

Dr McDaniel has, since I typed this, gone into business with his son A new company is very nearly ready to launch. AscendSciences.com With a Projection to launch internationally and able to place larger bulk otders, they are able to get the products that were in the new Eden at a considerable price reduction plus Dr McDaniel has been able to incorporate 5 additional nutrition enhancing products to make the best formula ever. The percent of the Aloe Mannitol has not been lowered.

The new product Q800+ will be available for something like $88. very soon.

Speech and voice disorders

Research shows that 89 percent of people with Parkinson’s disease (PD) experience speech and voice disorders, including soft, monotone, breathy and hoarse voice and uncertain articulation.

People with Parkinson’s (PD) may notice changes in or difficulty chewing, eating, speaking or swallowing. These changes can happen at any time, but tend to increase as PD progresses. Just as PD affects movement in other parts of the body, it also affects the muscles in the face, mouth and throat that are used in speaking and swallowing.

Beyond producing the sounds of speech, PD symptoms like a frozen or masked face can make it harder to communicate the emotions that go along with what you are saying. Others may misinterpret this as a lack of interest in the conversation or aloofness. In addition, some people with PD struggle to find words, and so they may speak slowly. And in other cases, PD causes people to speed up their speech, so much that it may sound like stuttering.

HOW does a person know if they have speech problem? Ask yourself if:

  • My voice makes it difficult for people to hear me.
  • People have difficulty understanding me in a noisy room. 
  • My voice issues limit my personal and social life. 
  • I feel left out of conversations because of my voice.
  • My voice problem causes me to lose income.
  • I have to strain to produce voice.
  • My voice clarity is unpredictable.
  • My voice problem upsets me.
  • My voice makes me feel handicapped.
  • People ask, “What’s wrong with your voice?”